ME CFS caused by infection / parasite?

ry350

New Member
Hi all. Im new here.

Basically my issues began around a year back. Chronic gastro issues. Fatty stools. Weight loss. I was screened for Celiac but all the specialist found was Duodentitis (?).

Since then - gradually - I have got worse. I weigh 115 lbs (male) and I look like a skeleton (with facial hair).

Now around the time I got ill, my cat was riddled with fleas, angry, depressed and also had really bad worms - I actually found one on the kitchen surface one day. Yak.

Now I get mucus in stools (smells like sickly sweet fish, wondrous), persistent dizziness, overwhelming fatigue, random and tender lymph nodes under armpit that disappear a day later and what appears to be dysautonomia (morning im cold, evening im hot, bp is low in the morning, higher in the evening). One evening I was actually 34 degrees (hypothermia) and felt confused.

Oh and Im being investigated for Malabsorption. I seem to eat, something happens, I poo it out and do not feel better (feel worse, drained and tired).

Ive had a CT today w/iodine. Ive had 2 brain MRI's and countless bloods (everything is hunky dory apart from Low lymphocytes and raised Immunoglobulins).

Now I got told by my doc that because my symptoms appear so general at times, and nothing pops up on bloods (ESR, CRP all low) that it could be ME / CFS, which scares me. (Anything chronic and mysterious scares me).

Im sceptical and I am still pretty much adamant that this is some chronic, stubborn infection or parasite, as I have these rushes of sympathetic nervous system overload, pupiles dilate, bp goes up, I get panicky and then I need to pass a bowel motion, and sometimes I feel better for doing so (anyone any ideas as to what THE HELL that is??)

Has anyone been in the same boat with troubles getting a diagnosis for such a thing? And has anyone with ME had parasites before? Or found that was what kicked off their ME?

Thanks
 

pbyr

Active Member
Yes. It would be highly suspicious of a gastro infection. Here is a post that might be helpful. Let me know if you have questions.

 

ry350

New Member
I seem to also have these times lately whereby - early morning / day time - my hands are freezing and my body to the core is freezing. Yet seemingly all of a sudden I get temperature fluctuations and go abit hot and my hands go a bit red.

As though someone is in my body playing around with the thermostat? My TSH level is fine (2.45)

Wth.
 

Abrin

Well-Known Member
Has anyone been in the same boat with troubles getting a diagnosis for such a thing? And has anyone with ME had parasites before? Or found that was what kicked off their ME?
I've never got an official diagnosis of ME/CFS (it is a five year waiting period to see someone in my area and I just have way better ways to use my energy) but when they were first trying to figure what was wrong with me they did send me to an infectious disease specialist and he told me that I was parasite-free.

It is easy for me to know what kicked off my ME because I was born with it.
 

pbyr

Active Member
I seem to also have these times lately whereby - early morning / day time - my hands are freezing and my body to the core is freezing. Yet seemingly all of a sudden I get temperature fluctuations and go abit hot and my hands go a bit red.

As though someone is in my body playing around with the thermostat? My TSH level is fine (2.45)

Wth.
Infections create quite a few problems, so your experience is normal with those with infection.
 

Apo Sci

Active Member
Hi all. Im new here.

Basically my issues began around a year back. Chronic gastro issues. Fatty stools. Weight loss. I was screened for Celiac but all the specialist found was Duodentitis (?).

Since then - gradually - I have got worse. I weigh 115 lbs (male) and I look like a skeleton (with facial hair).

Now around the time I got ill, my cat was riddled with fleas, angry, depressed and also had really bad worms - I actually found one on the kitchen surface one day. Yak.

Now I get mucus in stools (smells like sickly sweet fish, wondrous), persistent dizziness, overwhelming fatigue, random and tender lymph nodes under armpit that disappear a day later and what appears to be dysautonomia (morning im cold, evening im hot, bp is low in the morning, higher in the evening). One evening I was actually 34 degrees (hypothermia) and felt confused.

Oh and Im being investigated for Malabsorption. I seem to eat, something happens, I poo it out and do not feel better (feel worse, drained and tired).

Ive had a CT today w/iodine. Ive had 2 brain MRI's and countless bloods (everything is hunky dory apart from Low lymphocytes and raised Immunoglobulins).

Now I got told by my doc that because my symptoms appear so general at times, and nothing pops up on bloods (ESR, CRP all low) that it could be ME / CFS, which scares me. (Anything chronic and mysterious scares me).

Im sceptical and I am still pretty much adamant that this is some chronic, stubborn infection or parasite, as I have these rushes of sympathetic nervous system overload, pupiles dilate, bp goes up, I get panicky and then I need to pass a bowel motion, and sometimes I feel better for doing so (anyone any ideas as to what THE HELL that is??)

Has anyone been in the same boat with troubles getting a diagnosis for such a thing? And has anyone with ME had parasites before? Or found that was what kicked off their ME?

Thanks
I was recovering from mononucleosis (EBV) when I had a flea bite from a feral cat. This led to a purple postule at the bite site and my condition deteriorated. I think that infection with bacteria and viruses that block apoptosis are the fundamental cause of the myalgic encephalomyelitis diseases. The onslaught against the immune system causes it to become overwhelmed and the infections to silently proliferate. Dr. Lehrner postulated that two similar viruses can interact to cause a latent infection which is invisible to testing.
 

Not dead yet!

Well-Known Member
Doctors ignore parasites, even in the places I've lived where they're endemic. Two things you can do.. first, you can try alternatives like wormwood and if you recover, you know you had the parasites.

The other thing is to buy pyrantel from an online store (such as Amazon). This is the anti-parasitic given to Australian children, it often has instructions for human use, although in the US it's sold as a cat anti-parasitic. In any case, it's safe for human use.

I took it after I cleaned up my cat from a flea and worms infestation. It seemed to also help me feel more energetic, since then I've repeated taking it about three times a year. Every time I feel better for a while. I went to see an infectious disease doctor, it was a disaster, they completely ignored my problems. One of the worst experiences of my life with any doctor.

If your pet goes outside, you must use ivermectin type meds to keep them safe and yourself safe. Only a vet can give your cat that med, at the proper dose, it covers many types of worms although for active tapeworm they may use a different med.

Yes infection can lead to ME/CFS. If you suspect a parasite a visit to a functional MD may be the ticket. Here's one doctor talking about it on her blog: https://www.amymyersmd.com/2017/05/10-signs-you-may-have-a-parasite/
 
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Not dead yet!

Well-Known Member
I seem to also have these times lately whereby - early morning / day time - my hands are freezing and my body to the core is freezing. Yet seemingly all of a sudden I get temperature fluctuations and go abit hot and my hands go a bit red.

As though someone is in my body playing around with the thermostat? My TSH level is fine (2.45)

Wth.
My TSH has always been fine too. Probably, Celiac had caused the T3 in my body to be deactivated. Only a Reverse T3 test will show if that's happening to you. Few if any ordinary doctors do that. I had to go to a Functional MD to get that worked out. I take liothyronine.

Of course if you're a woman in her 50s, then it's probably hormones.
 
For a year I struggled with low body temperature (97-97.4), I could barely move until I took a scalding bath and heated the house to 95. No hot extremities though. Anyway, it went away. Good luck.
 

ry350

New Member
Update : I now have a dull liver ache running through to my back. Mainly after eating. And intermittent palmar erythema. Mainly after eating.

They did a CT and found nothing but a calcified granuloma in my liver.

That in itself isnt a major concern but why it's there, is.

I believe it's a longstanding infection that doesnt want to budge and might actually be kinda dangerous- either that or overgrowth of bacteria in my small bowel that is being taken up by the liver and re distributed, hence the palmar.

Anyone any suggestions on what I do? It feels horrid. Chills, Nausea, but my bloods are okay.
 

Apo Sci

Active Member
Update : I now have a dull liver ache running through to my back. Mainly after eating. And intermittent palmar erythema. Mainly after eating.

They did a CT and found nothing but a calcified granuloma in my liver.

That in itself isnt a major concern but why it's there, is.

I believe it's a longstanding infection that doesnt want to budge and might actually be kinda dangerous- either that or overgrowth of bacteria in my small bowel that is being taken up by the liver and re distributed, hence the palmar.

Anyone any suggestions on what I do? It feels horrid. Chills, Nausea, but my bloods are okay.
Do you have any symptoms of low immunity, ie. getting more infections than usual, tooth loss due to reinfected past root canals?
 

Not dead yet!

Well-Known Member
Update : I now have a dull liver ache running through to my back. Mainly after eating. And intermittent palmar erythema. Mainly after eating.

They did a CT and found nothing but a calcified granuloma in my liver.

That in itself isnt a major concern but why it's there, is.

I believe it's a longstanding infection that doesnt want to budge and might actually be kinda dangerous- either that or overgrowth of bacteria in my small bowel that is being taken up by the liver and re distributed, hence the palmar.

Anyone any suggestions on what I do? It feels horrid. Chills, Nausea, but my bloods are okay.
This really sounds like Celiac to me.

Men have very unusual symptoms and often have negative screening, but when the endoscopy and biopsy is done, there is flattening of the villi and immune cell infiltration. It could also be some other autoimmune issue that attacks your gut, but if it's duodenitis then that's too high up to be Crohn's. Inflammatory Bowel Diseases come in two types, Crohn's and Ulcerative Colitis. However, if it's higher up, then the most likely thing is Celiac.

I had liver damage by the time my Celiac was found.

I manage it with Choline supplements and by eating liver which usually stops the pain, but it's still intermittent. My liver values have been normal though.

Do you stil have your gallbladder? Is it normal? Have you been tested for Sphincter of Oddi issues? That test is fairly painful, so they don't offer it first.

How are your vitamin A and D levels? Without those two, in the animal forms, not the plant forms, your liver can't heal itself. And if it's sick, it can't go from D2 to D3, or beta carotene to Vitamin A. Not very well anyway. After I stopped being Vegan, my liver was sick and had set itself up to only use D2. It took about 2 years to have my body recognize and use D3 again.

In my case, I am affected by Spinach, it gives me extreme joint pain. They say that's a superstition, but they wouldn't say that if they felt my pain. I've switched from "creamed spinach" to "creamed swiss chard" and it feels so much better. I need the minerals in greens and in whole grains. None of fashionable diets (keto, paleo, vegan, etc...) work perfectly for me. However, I have to be gluten free because of Celiac. Otherwise, I try to take each food on its own merits.

Doctors don't really do much for the liver or gut until it's time for surgery. So my advice is, research how hepatocytes heal themselves and work toward providing the nutrition to support that.

If you suspect an infection, then you might convince a doctor to prescirbe xifaxan for SIBO or flagyl if they want to cover more bases. The calcification can also be parathyroid overactivity though, that's hard to diagnose too.
 

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